What’s the Big Deal about Rheumatoid Disease?

Just how big of a deal is this disease? I suppose the fact that I’ve written several hundred pages about it is a clue to my opinion. Yet, most of those articles were written with intentional restraint, avoiding hyperbole, at times even understating my own symptoms in an attempt to be more judicious.

Many view Rheumatoid disease as something less than what it is and that leads to outrageous minimizing of facts related to it. Unfortunately, that is even done by many who have been charged with researching or reporting concerning the disease.

Over the last three years, I’ve communicated with those who do not have RA using as little emotion as possible because as an RA patient, I felt vulnerable to a cruel Catch-22 of this disease: the worse we portray the disease to be, the more it is assumed that it’s an exaggeration. Here on the blog, I’ve covered accusations of low pain tolerance and catastrophizing about a disease that can supposedly be treated by diet or lifestyle changes (see recommended reading below for some examples).

What is the big deal about RA?

This disease is a big deal to a significant percentage of patients who’ve lost physical abilities, careers, and relationships.

RA is also a big deal to many of us who have lost family members to it. Over the past few years, we’ve also seen loss in our community although it’s often played down partly because we don’t want to scare others. However on January 23 a warrior some of us knew, Cathy Russell, passed away and her family has asked that her memory be honored by contributions to the Rheumatoid Patient Foundation (Los Angeles Times obituary).

RA Warriors are people who often fight for every bit of life they enjoy. Some fight to get out of bed or be able to dress or eat. Others fight to keep jobs to provide for their kids. They do all this with few accommodations and in the face of a collective shrug from a world who thinks the disease is no big deal.

Warriors like Cathy are intelligent, sensible, and brave. They choose to fight a disease that often causes dangerous conditions such as infection, heart or lung disease, lymphoma, anemia, or spinal cord instability. Yet they fight with treatments which have their own additional risks.
RA is certainly no big deal to those who are deceived about it as Judi Ketteler was back in 2009. Her article in Woman’s Day drew hundreds of calls, comments, and letters to the editor from us. We’ve covered many similar articles. My friend Carlo showed me another one on Twitter yesterday morning that certainly depicts the ignorance (slander) often described by commenters here. We are used to it, but we are also aware of the damage it does.

I realize some will be turned off because they prefer to hear about “Woman’s Day RA,” an easy going kindler gentler version of RA that has a happier ending. However, I’d like to see the real RA cured. And that’s not going to happen as long as it’s no big deal.

Note: Although the editors at Woman’s Day did not withdraw their position in response to our many letters, comments, and calls, there was a happy ending with Judi.